Showing posts with label congential heart defect. Show all posts
Showing posts with label congential heart defect. Show all posts

Sunday, January 23, 2011

Underneath it all (and a surgery update)

(NOTE: Before viewing this post, please be aware that some of the pictures may be disturbing to some people. Do not scroll to view the pictures before reading what this post is about.)

It has been almost a week since I last wrote about the surgery.
I have honestly not known how to put anything into words.
It is disappointing and sometimes discouraging not to have it over with by now.
I was so ready to hand my daughter over to people I have never met and allow them to stop her heart.
I had found my peace and then lost is so quickly.

Eslea's surgery is scheduled for this upcoming Wednesday.
By 8:00 A.M. on Wednesday morning, those same doctors and nurses that I have still yet to meet, will be working to heal my buggie.

We have started getting ready..again.
More prayer.
More packing.
More everything.

I was thinking how blessed we are to have so many friends and caring people that are keeping our little girl in their thoughts and prayers.
So, I decided to explain (and show) a little more about exactly why the prayers are so very needed for our buggie.


Eslea is now four months old.
She was born in September of last year with congential heart defects.
Three to be exact.
Her ductus arteriosus has not closed since her birth (PDA). Her second hole is caused by an atrial septal defect (ASD); a form of congenital heart defect that enables blood flow between the left and right atria via the tissue that separates the left and right atria. She also has a ventricular septal defect (VSD) in the wall dividing the left and right ventricals of the heart. This hole is the largest and takes up about 70% of that tissue. She is in congestive heart failure.

Basically, all that to explain that her lungs and heart are starting to fail. Her lungs have to work overtime to pump the blood that the heart just can not push through. She is still under 10 pounds yet she is almost 23 inches long. She is on three types of heart medication.
Did I mention, she is only four months old?

There are so many other families that have been through this before. Yet others, like me, did not know how often this defect occurs. Almost 8 out of every 1000 newborns are born with a congential heart defect. That is almost 35,000 babies a year.

I do not write this post for those that know this information such as those parents that have been through the same. I do this for those that do not. Those people out there that do not realize what a struggle these babies go through every day just to take a breath.

I am posting pictures of my baby in just her diaper. I only have four to show becuase it is so very hard for me to see her this way. I try to keep clothes on her all the time. Not only because she gets cold so easily but because I cry when I see her bare for too long.
The fact is, even the pictures can not truely reflect her appearance in real life.

With that said, here is my buggie, underneath it all....







Well, that's her..all of her.
I hope you can now see why I value every prayer sent her way.
She, just as all the litttle blessings like her, need them.

Two more days.

-erin

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Friday, January 14, 2011

Skipping a beat (4 days...)

No. I still know how to count backwards.
It is the date that has changed.
This morning Eslea's surgery was moved up one day.
To the 19th.
One less day I have to worry.
One less day I have to fight off the negative thought buggers.

Butterfly kisses between sisters.


I am so amazed and blessed by the show of support surrounding us.
Sometimes in life it takes an event to remind you of what and who are the most important things in your life.

Like friends, family and caring coworkers.
I am blessed to be surrounded by all three.

Today, some of the most considerate and God fearing people I know gathered together at my place of work for a prayer circle. There were 15 of us.
I do not want to write their names, but they know who they are.
I am eternally grateful for them. For lifting up my Eslea in prayer and continuing to pray for her.

I have been struggling to hand this one over to Him.
It's harder when it's your baby girl.
I am the mother. I am the parent.
I should make things better.
Yet there is a parent greater then me.
A Father who knows what is best.
That prayer circle today helped remind me of that.
My load feels lighter.
I trust Him.

With only four days left till her surgery, I want to celebrate the LOVE of those that surround her...







I do not know why I find this so scary. It feels like the hardest thing I have ever had to do.
Thank you to everyone that continues to show support to our little girl.
Thank you for the comments and the prayers.

-erin

Wednesday, January 12, 2011

counting down the days (and some thank you's)

Seven days until Eslea's surgery.
I am trying to not think about it.
Yet, it creeps in...those thoughts.
The ones that make my eyes burn with newly forming tears.
I hate those thoughts.
So I push them away and I focus on the good in front of me.
My Eslea.

I adore my Eslea.
She is an angel just like so many blessed kiddos that share that extra little chromosome.

Today.. there are seven days left till her surgery.
Today, I enjoy the BEAUTY of her...
She is an angel.

Eslea my precious.
Thank you for choosing me to be your mommy.
I am honored.


Thanks to everyone who commented on the last post.
Facebook, blog, email...I read them all.
I took your advice. I looked up organizations, joined groups, and found new friends.
I take peace in knowing the success stories of those who have come before me.
Thank you all so much for sharing.
Little buggie thanks you too.


I love to hear any words of wisdom or other advice as long as you are willing to send them my way.
Thank you again.